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Emotional Drama and Pain

I haven’t talked about my brother in a few days because I had to sort things out. Now days

later, I wish I could have gotten it all straightened out in my head. I had went to see Al and as soon as he saw me he started telling me what happened.

The first thing I want to make clear before I get going is, whenever Al has important issues to him he saves them for me.

When something at the facility happens, the nurses never let me know.

And lastly, I understand it is a brother sister thing. Al will save his priorities for my ears first.

So on with the story. He starts in telling me that some staff member, named Melanie who works in therapy saw him sitting out in the hall on his walker. He has one of those walkers that has the built-in seat.. He told me that she said, ” You are not supposed to be sitting to go anywhere, you are to be walking”. Then in a blink of an eye he starts crying very hard, and he is going on and on how no one understands how much pain he is in. He said,” I told that lady that she could have my knees and legs any day. That she had no right to talk to me about walking. Can’t she tell that I would walk if I could”?

I had no idea what was going on, but I was piecing together a misunderstanding. On my brother’s behalf I went to a nurse and then she took me down to another nurse’s station, and we sat together while I repeated Al’s story. I asked them to please explain what had happened so I could go back and calm him down.

They rambled on a story sort of similar to Al’s. They explained that the therapist was just kidding with Al and that the nurses had told the therapist to go apologize to Al. I was feeling a little uncomfortable from all of this. It seemed a bit over dramatized on Al’s side. He had his feelings hurt, she had made a funny remark, but he took it wrong. I said my thanks and went back to explain to Al what they had said.

As I start to enter his room I can hear him cussing up a storm and I can hear his sobbing. I went in and took a hold of his hands and tried to calm him by explaining what had happened and that he just didn’t remember the apology from a short time ago.

He let loose on me, calling all the nurses liars, and saying that no one came and apologized to him! Other nurses heard the commotion as they walked by and soon three nurses and a couple of aides were present for the show.

An aide spoke up and said that he had been complaining ever since 9:30 that morning. It was now noon. The more the nurses tried to explain themselves the more Al got upset, until he decided he was not partaking in lunch.

I was speechless. My emotions were high. Tears fell from me for Al and the drama that was going on. All I could think of was, why didn’t someone call me when this happened. I finally voiced it and it got silent. Nurses and aides looked at each other for what seemed minutes, and then one stated that he has been mad all morning even going as far as being mean mouthed to a nurse. I said, in monotone, ” you should have called me”.

I was at a loss. I didn’t know which way to turn. Then I got an idea. Let’s take Al to the therapy room and have him point this gal out. We get him out of the chair, take him there, and he can’t pinpoint her. Case over and closed. I haven’t spoken of it since. I know something happened, but what, I am not sure.

Today, I went in to see him. I walk in to see Al butt naked. He is bent half down from his knees. He is trying to bend over and get a pair of clean pants. I help him get them and we take off for the bathroom.

I noticed that the bathroom emergency light was on. He had pulled the help string, but no one had gotten to him as yet. At the same time I am taking him to clean him up, his boss from his old job walks in and Al loses it all over again. The tears are soaking his clothes. The boss is looking at me. Al was totally embarrassed that someone he thought so much of now knew he was wetting himself.

The boss stepped out while I took Al’s soaked brief off. He smelled so darn bad. I put a clean brief on him and clean pants and washed him up a bit. I left his dirties on the bathroom floor since there was company and took Al back out.

His boss had brought him one of those giant size Christmas cards with over 200 signatures. He would not open it. They had purchased him a sheep lined soft blanket, that I was so jealous of. He never took it out of the bag.

It isn’t that he was mad, he was embarrassed. He was in pain and he is miserable from the disease. The sight of his boss brought back memories for Al of things he used to do. Al is so emotional anymore, I am not sure if I can even hate Parkinson’s Disease anymore than I already do.

Scott, his boss tried to carry on a conversation but it just wasn’t working. I had a meal for Al that I had picked up on the way, getting cold on the bed, so I suggested it was lunch time. Why didn’t we take the lunch and his boss and me down to eat. Scott could sit with him.

Al thought that was a good idea but couldn’t get out of his recliner. His legs were frozen. We got him up and then walked him out in to a hall, where now always sits a wheel chair for Al’s weakness. Sometimes he can walk and others not hardly at all.

I sat him in one of the two chairs and a lady comes out from across the hall and starts accusing us of stealing her chair. Oh brother, look at the mess I have created now, I was thinking. I got Al over in to the other chair and of course he is letting the lady know that he would not steal her chair.

Finally we make it down to the dining room and then in another blink of an eye, Al is back to a more content Al. He is telling everyone and repeating himself over and over that his sister and boss are here. He explains which one of us is the sister and which one is the boss.

Later on the boss leaves and I think it really disturbed Scott to watch Al make such a mess eating. He has not seen Al like this before. Al had food all over his mouth, fingers and clothes. It took him an hour to eat. I saw nothing to clean him up with so I walked over to a sink and took some paper towels and wetting them, cleaned him up.

When I wheeled him back to the room, I opened his big card for him because he could not. He could not see any of the writing so I read to him all 200 signatures and well wishes. He seemed calm but I could see his eyes drooping. I asked him if he was getting sleepy and he said yes, but I can’t take my nap until I read my bible. I said why, and he told me,” because if I die during my nap, I want God to know I am here waiting for him”.

My heart dropped and my tears fell. I leaned over and gave him a kiss on the forehead and told him how much I loved him. As I was leaving his room a nurse pulled me aside and said,” Al’s Parkinson’s is getting worse. We are going to be using the wheel chair more. The doctor is upping the strength on his pain medications. I hope you realize what is happening”.

As she turned and left I stood in the hall, not being able to move. I leaned my head back against the cold brick wall, and wept. I was thinking to myself, of course I know what is happening. He is getting worse. He can barely stand. He is using a wheel chair more and more. Doctor is giving him stronger medications to bring him more comfort. He is struggling to feed himself. Yes, I see it all. I am watching my brother continue to deteriorate. Please, dear God, help me to have the strength to be a support system to my brother. Bring him peace Lord and help him in any way you can.

Finally my legs began to move and I lifted my head and my body found its way out the side door. Tears fell all the way home, as I knew I was slowly saying another good-bye.

thank you so much Stephen. You live in Indiana? That is awesome. Of all the bloggers I know, there is only one other that I know lives in this flat land. I have kept your email and thank you. God bless you each moment of the very merry holidays

I know that peoples religious beliefs make this is very contraversial thing to say but there are times when it seems we allow our beloved pets to pass with far less pain and suffering and a lot more dignity than our fellow man. I don’t pretend to know an answer to the ethics but we use medical intervention to prolong life maybe there has to come a time when someone questions how far we should or whether quality of life should mean more than quantity

I understand what you are saying exactly. Al is getting nothing more than pain medications to help ease his days. There are no medications any longer to prolong health. it is sad but i see him as suffering and will not use medications to prolong his life for my selfish reasons

Oh I know Paula and I didn’t take it that way, but for so long I would suggest any medication to keep him here with me, and now I have quit. I just want him to be at peace. don’t worry my friend…………u r alright in my book!!!

My heart breaks for you and a lone tear made its way down my cheek, I am praying for Al because I believe in miracles and I am praying for you right now to receive more strength. It is well my dear.
Love and peace-:)

My prayers continue to be with you both… no one on earth can understand exactly what Al and you are going through. But the wonderul blessing is that the Lord does understand and is watching over you as each day passes. May He continue to supply your needs during this very difficult time.

Terry, my heart continues to break for you! It must be so hard to watch your beloved brother suffer so much. God has a plan, we just aren’t always privy to what that plan is, Prayers continue for you both.

People like you and I who are so closely attached to the person who is in the home….feel so much and want everything to be as close as possible to what they felt when ‘we’ were looking after them. Alas it is not so…There are so many caregivers that it is never one on one care. And each of those caregivers have different outlooks and views and personalities. It’s not that they don’t care…but just that there are many to take care of.

But it doesn’t make it easy for us to hear stories or see things that we wish were different. Sometimes when we would go and see my Mom she would be sitting in a wheelchair soaked in urine. She could not communicate so could not ask for help and so would just be sitting there..often sleeping sitting up. My heart broke as she was a woman who always took impeccable care of herself. So we would take her and clean her up etc. and it took forever to get them to put a ‘depends’ on her so at least she wouldn’t get soaked. Their reasoning did not make sense as to the reason so finally they did.

All I’m trying to say is that it will continue to be difficult for you but all you can do is what you are doing…try and straighten things out and make Al as comfortable as possible…Take care Diane

i understand what you are saying Diane, and you understand me very well. I know that it can never be like it was here at home, but i guess i thought they all would see Al as I do, and it is not that way. I just keep trying to make things right

Oh, what a visit!…So glad you are there for him…and do all that you can do to get to the bottom of things…I’m not saying anyone would mistreat him…but, no one loves him and will care for him like you did…
I met a gentleman at the YMCA with parkinsons …His daughter brings him for water therapy…Swimming aerobics…he’s right there with the rest of us…and a treat…His smile is infectious!…You have taught me so much…
I hope you can enjoy your Christmas and that Al will feel good for that day…No tears!…mkg

Hi Terry! I felt so emotional reading this! My heart goes out to you. I think I told you before that i used to volunteer in a old peoples home. It’s sad for the people there and their families. Sometimes I found the staff cold and inattentive,which used to upset me terribly!
Then there were days where the residence had been completely draining and awful to staff members. Families would come in and they would complain of being mistreated! Obviously this distresses family members and they can become quite vocal. Sadly they didn’t see what the staff had been dealing with all morning! It’s really a catch 22 situation. Your a wonderful loving sister and are doing everything you can for Al. Huge hug for strength! ……Paula x

I try to be very careful in what I say because I have now been on both sides of the fence. I have worked in the nursing homes and now am the family. thank you for this wonderful comment. I like it that you understand me

Terry, I am for a short time and in this article I understand the pain that affect you. What you are experiencing is difficult, because the “helpers” are not well supported, either in your country or here in France. I understand, write, write down all your problems, help you to overcome some of this difficult time. What you are going through will become harder to overcome. I think it is useless to lie. This disease as well as Alzheimer’s is progressive. If you manage to look more detached, watching from afar, to accept that life is different from your brother, you will be stronger in the coming months. As long as you refuse this disease, you will suffer. You must also think about how to protect yourself. Your brother needs someone who is strong. Even if you hide your her moods, he can feel. He did not need pity, but just compassion. But more importantly, he needs the sister he knew. God bless you

As much as it might not seem like it at times, the fact that Al saves his big problems for you shows that he really does know that you are there for him and care. I’m sorry it’s so hard. Thinking of you both. xoxo

In a twist of fate, I am a nursing home therapist named Melanie, so your story touched me on many different levels. Having had our own loved ones in a facility at different points, some have gone back home, and some havent. But as time passed, we have said our goodbyes to all of them. And trying to be as compassionate as possible to patients and their families, even on days when my heart and bones are so sore from all the damaged bodies that it is hard to reach out to yet another. And times when I have no idea why what I have said, meant in kindness, has sent a patient or family member to lashing out ( which is how I got the injuries now keeping me from working) As staff, I thank you for taking a calm approach when your heart was hurting. As family, my heart breaks along with you. You are an amazing sister, and Al is so very lucky to have you in his life.

Hi Melanie. With Al, he can become very confused and I can not believe each word he says, not that I don’t want to, but I can not. Therapists are wonderful people who give their all, but as his sister it rips my heart out, because even with misunderstandings, he believes what he is saying, and to not have me agree all the time, hurts him. this is so hard, but I have to pick and choose what I think in my own heart, and I do not believe that the therapists said anything more than just trying to make a funny for him, to see him smile

Hi Terry, I cannot say I can imagine what you go through as I can’t. I have never been there, but I wish you all the strength you need to cope. It is wonderful to read how much love you have for your brother and how wonderful you are with him. You are a rock for your brother. Wishing you lots of strength to go on! I admire you!

Your feet will carry you through this, as weak as you think they are, you are so much stronger than you know with God’s grace. Truly, angels will lift you, you are not alone. Please remember this always.

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